Service and giving are qualities that are greatly cherished by all of us at the NFED.     You, as a volunteer, help our organization by lending a kind helping hand – and our only payment to you are wages of love, gratitude and knowing that you are making a significant impact on lives.  Everyone has such busy lives so we appreciate the gift of time; as it is an immeasurable gift.

We truly appreciate the 200+ volunteers who supported our mission this year, like the Nelsen family who hosted a Don’t Sweat It Fun Walk/Run; the Timmerman family who sold lavender cooling mist at a festival; and the committee who oversaw our new website development. This is only the tip of the iceberg and doesn’t begin to include all of the people who hosted and volunteered at family fundraisers and social events and who also raised awareness by sharing information on social media. There are many of you working quietly in your communities to spread our mission; we may not be aware of it, but we are grateful for your efforts.   Together we will make a difference!

You are truly the Supermen or Superwomen in the lives of people affected by ectodermal dysplasias.  There really are no words to adequately express our appreciation for your donation of your time, talents and treasures to the NFED.

How Can You Help in 2017?

We hope that you will have some time to help us in 2017.  You are the backbone of the NFED and we need to expand our volunteer crew next year to better serve all of our families. We have numerous ways you could get involved and make your mark.

  • Will you host a Family Fundraiser? We have toolkits to help you plan Dining for DollarsCookies for a Cure, or a Garage Sale. Have other fresh ideas? We’d love to hear them and help you. You may consider hosting with another NFED family.
  • We are seeking more families to host a Don’t Sweat It Walk/Run.  These are easy and events you can do with your family and friends.
Volunteers Jean Stomberski and Cathy Stanford from Delta Theta Tau Sorority register families at the Family Conference in St. Louis.
  • We hope you will participate in the first ever NFED Advocacy Day on Capitol Hill in Washington, DC.  We need at least 50 volunteers to join us to make some noise on Capitol Hill! The NFED needs your voice!  You will meet with your state legislators to share your story and information about ectodermal dysplasia. Never did this before?  Don’t worry we will provide on-site training.
  • Our 2017 Family Conference in Falls Church, Virginia is going to be one of our biggest conferences yet. We need all of the help we can get!  Can you give a few hours to help us at the event?

This list above is just a few ways you could help. Contact us and we can figure out how we can work together.

President’s Volunteer Service Award

Have you heard about the President’s Volunteer Service Award?  This is a prestigious volunteer award.   We track volunteers’ hours and will help you work towards earning this award for your service hours.  This is a great addition to a resume.

The NFED supports thousands of families, provides numerous programs and together we have an entire world to educate, we can’t do it alone.  Please be a pioneer who helps us create change and safeguard our mission to empower and connect people touched by ectodermal dysplasias through education, support, and research. Can we count on you?

Join our team and sign up today to volunteer.


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